by Sam Kean
The flight is turbulent, so the flight attendant perches on the arm of the seat in front of me. “I go home after surgery and I have a chill, so I take my medication—they give you such powerful medication—and I sleep. Thank god my friend came over and said I had to take a shower, because I took off the bandages and it was as red as this!” She points to the crimson bit of her Delta pin.
The flight attendant, diagnosed with stage-3a breast cancer, had developed a blood infection, and had to go to the hospital for intravenous antibiotics. After that, she had 8 rounds of chemotherapy and 33 of radiation.
“There was so much pain, but I had to walk through the pain. I made myself,” she says. “I wrote ‘I love you’ on my mirror in lipstick. When you’re single and you have cancer and you look at yourself, you need to read that. What else is there to do?”
VI. Silicon Valley—Or, The Brain
Through the floor-to-ceiling windows of the Parker Institute for Cancer Immunotherapy in San Francisco are the windswept headlands of the Golden Gate Bridge, the Pacific Ocean, and a frothy coral rotunda called the Palace of Fine Arts.
“Would you like a water?” asks the center’s publicist when I visit. “Still or sparkling?”
Of all the cancer centers I visited, the Parker Institute seemed the most like the future of medicine. The office, a few doors from Lucasfilm, has one of those pristine, snack-filled tech startup kitchens with glass jars and a microwave that pulls out like an oven. On a table in the reception area sits a set of glittery silver pamphlets the size of small yearbooks explaining the mission.
The man behind the Parker Institute is serial entrepreneur Sean Parker, the cofounder of Napster and intermittent recipient of richly deserved tabloid jabs. Parker doesn’t have the most sterling humanitarian reputation: In the movie The Social Network, Justin Timberlake portrayed him as a narcissistic party boy who screws over one of Facebook’s cofounders and is arrested for cocaine possession. Parker was fined $2.5 million by the California Coastal Commission for building the set of his $10 million Lord of the Rings–themed wedding (complete with fake ruins, waterfalls, and a cottage) in an ecologically sensitive area. And yet, a little over a year ago, the same man donated $250 million to fund the study of immunotherapy at a lavish backyard gala featuring performances by John Legend, Lady Gaga, and the Red Hot Chili Peppers.
The public story about Parker’s philanthropic effort is that it stemmed from the death of his close friend, film producer Laura Ziskin, to recurrent breast cancer. According to Jeff Bluestone, the Parker Institute’s president and CEO (and, incidentally, the researcher who characterized CTLA-4 around the same time as Jim Allison), Parker was interested in cancer long before he met Ziskin. “Sean’s been interested in the immune system for much of his life, because he’s got asthma, and he’s had a serious immunological imbalance,” Bluestone says, sitting at a polished, raw-wood conference table half again as long as a normal conference table. (Parker is extremely allergic to peanuts.) “As long ago as 2004, before Laura got sick again, he thought the immune system was going to be the answer. He deeply understands a lot of the science. We joke, is he a second-year graduate student? A third-year postdoc? Should he just go get a Ph.D.?”
Parker is not the first very wealthy person who has used his money to combat disease. Several people at the institute took care to explain how they were different from the Howard Hughes Medical Institute, a science-funding organization founded by the reclusive airman in 1953. A more influential predecessor might be Michael Milken, the Wall Street financier who founded a charity dedicated to family medicine with his brother Lowell in 1982 that supported, among other things, the research that led to Gleevec, the precision-medicine drug. Milken’s funds also supported Jim Allison during an important time in his pre-checkpoint-inhibitor-therapy research when his National Institutes of Health grant had briefly lapsed. In 2003, Milken cofounded FasterCures with Greg Simon with the goal of increasing the pace of cures to “all serious diseases.”
Some would argue that technology entrepreneurs are exactly the people who should be constructing the immaculate future of cancer research conceived by people like Joe Biden and Greg Simon. For one thing, tech entrepreneurs have already disrupted everything else. They understand the fast-moving, coin-chasing world of biotech development. Parker himself has already succeeded at convincing hardheaded institutions to work together. While he was an early investor and board member in the music streaming service Spotify, he negotiated with Universal and Warner to convince them to participate.
The Parker Institute’s fundamental accomplishment thus far has been to do exactly this in cancer research. From the beginning, six academic research institutions signed on to work together under the Parker Institute’s umbrella: Memorial Sloan Kettering; MD Anderson; Penn Medicine; Stanford Medicine; University of California, Los Angeles; and University of California, San Francisco. The six, along with independent investigators at a few other research institutions, agree to share research data and work together on goals and projects without getting hung up on institutional constraints, such as intellectual property. In return, they get two things: money, which every cancer researcher needs, and guidance, which is equally pressing but not necessarily as obvious.
“To become a leader in this field, to be a Carl June or a Jim Allison, you usually have to be a bit—not myopic, but a little blind,” says Fred Ramsdell, the Parker Institute’s vice president of research. This is common in science. To understand and work on a complicated concept, a researcher has to shut out the noise of everything except his exact area of expertise. Someone who works on checkpoint inhibitor therapies in melanoma, for example, might not see much use in reading about ovarian cancer detectors made out of nanocarbon—until suddenly it’s the exact bridge to his own next level of progress.
“If a person knows nothing about nanoparticles, I can step in and say, Hey, this nanoparticle thing might be exactly what you need,” says Ramsdell. “I spend a lot of time trying to develop relationships between people who might not always do so on their own.” Some of those relationships are between researchers themselves. Others are between M.D.’s and Ph.D.’s, or between researchers and drug companies, or engineering companies, or the U.S. Patent Office. It doesn’t really matter, so long as the arrangement furthers knowledge.
Up the coast in Seattle, another tech company is attempting to help cancer researchers cross entrenched divides. Microsoft’s Project Hanover has already made considerable progress on creating a combined, searchable repository of the scientific news released every month by cancer researchers all over the world. The idea is that artificial intelligence will do a better job of parsing the vast landscape of scientific papers (those paper airplanes flying between ships) for insights. Rather than fallible humans trying to catch every valuable new detail as papers fly out of scientific clearinghouses, the system will do it for them, considering every possible combination of targeted drugs and genetic interactions in less time and more detail than it would take a team of educated humans.
Microsoft calls this the reasoning bottleneck. In a way, they’re tackling it the same way the Parker Institute is. The same way the human body does: they’re adding a brain.
Interlude
San Francisco. It’s late. At the restaurant, there is a man seated at the chef’s table when I arrive, drinking a balloon glass of red wine.
“How’s the food?” the man asks after a good half hour. It is delicious—a buttery bucatini with lamb ragu and bread crumbs. The man has lived down the street from this restaurant for years. He’s a former tech entrepreneur who is now a project manager for a retail company. I tell him what I am writing.
“That’s a hell of a coincidence,” the man says. “I just flew home from watching my father die of cancer.”
“Jesus, I’m sorry.”
“He’s still there. With my sister. He told me he was tired of feeling like he was on death watch. He told me I should just go. So I went.”
He sip
s his wine.
VII. Hope
What you see after a person has been debilitated by cancer and lived are the scars. The missing jaw or breast. The colostomy bag. Hair that has grown back curly or coarse or gray in patches. Tattoos that mark the paths of radiation beams. The disease that contains all of human biology leaves no one unchanged. There is before cancer, and then there is after.
Above Patrick Garvey’s desk, on the top shelf of a bookcase, sits a stack of brown resin jawbones—dozens of them, mostly the mandible, or bottom jaw, which is commonly replaced with a bit of lower leg bone when it has to be removed because it is shot through with cancer. Every jawbone above Garvey’s desk is a relic from a surgery he has performed at MD Anderson over the course of three years—more than 200 patients whose faces are forever altered by their interaction with the disease.
Later today, Garvey will operate on a man with a more difficult case—a large tumor in the maxilla, or top jaw—as part of two surgical teams. The first team will remove the tumor and most of the bone, including the man’s eye, and then Garvey’s team will remove a piece of the man’s fibula along with its blood supply and use it to reconstruct the man’s face. “We’ll be here into the night,” Garvey says.
This type of surgery is called microvascular reconstruction surgery. It drastically improves life for patients who would otherwise, like late film critic Roger Ebert, no longer be able to eat or talk without support. When it fails, however, it fails impressively: the transferred bone must have the correct blood supply or the body will simply reabsorb it, leaving only the bare metal scaffold the doctor implanted. Human bone is far better suited to the long-term mechanics of chewing and talking than metal is, and a plate without bone to protect it will eventually snap, like a paper clip bent back and forth over and over. Garvey has had to reconstruct jaws that have failed before, leaving patients disfigured and unable to chew properly. For a patient who has already undergone treatment for cancer, the impact of having to have multiple reconstructive face surgeries is harrowing.
To make the surgery simpler, Garvey’s team uses 3-D-printed cutting guides and robotically milled metal plates to create the most precise reconstruction possible. This is how the brown resin jawbone graveyard above his desk got started. After a patient has a CT scan, a company called Materialise in Plymouth, Michigan, prints the jaw models as well as bolt-on cutting guides that show the surgeons exactly where to saw and reconnect fibula bones to match the person’s original bone structure. Another company, in New York, creates a metal scaffold that is meticulously bent so as to recreate the original face angles, so MD Anderson’s surgeons don’t have to bend an off-the-shelf part into position during the reconstruction.
By all accounts, using 3-D-printed guides to reconstruct a human face is an advance at the very edge of cancer medicine, and yet it is still disheartening to look at the statistics. Last year, another 1.7 million Americans were diagnosed with cancer, and almost 600,000 died. Since 2004, according to the latest data available, the overall decline in death rates has been just 1.8 percent in men and 1.4 percent in women year over year. The five-year survival rate for pancreatic cancer, which most doctors consider the worst of the worst, sits stubbornly at just 8.2 percent.
Perhaps the cure for cancer seems so elusive because it’s a failure of semantics. “Curing cancer” is impossible, and the statistics reflect that: cancer kills more Americans every two years than those who died in every war we’ve ever fought. However, helping some cancer patients, the luckiest of the unlucky, live in relative normalcy for years is not just possible. It is happening. The five-year overall cancer survival rate is up from 50 percent in 1975 to 67 percent today. For melanoma, it’s 91.7 percent. For prostate cancer, it’s 98.6. It will take time for the most promising treatments to trickle down to everyone they might be able to help, but in the meantime, the march continues.
What this has to do with Patrick Garvey is that, even subtly, using 3-D-cutting guides to improve plastic surgery shifts the focus of cancer treatment from emergency battlefield triage to matters of aesthetics and psychology that matter months and years down the line. Without saying it, exactly, the field of cancer treatment is acknowledging that cancer could one day become a survivable disease—that even a stage-4 metastatic cancer patient could survive long enough for normalcy to matter.
There are others on the frontlines: at hospitals across the country, women with breast cancer can wear a scalp-cooling system called DigniCap during chemotherapy treatments to reduce the likelihood of hair loss. At MD Anderson, a neuroscientist retrains patients’ brains to improve altered nerve sensation caused by chemotherapy. St. Jude hired a psychologist to help teen cancer patients plan to save their eggs or sperm, in case their treatments render them infertile and they want to have a family in the future.
Future. A tricky word for a cancer patient. Who gets to have one is still a function of blind fortune. But all these ideas are starting to come together, and progress is suddenly accelerating. We are at what Crystal Mackall calls “the end of the beginning,” and the hope is that one day soon, the miracles will no longer be miracles. They will just be what happens. Until then, we pin our hopes on the incremental or unpredictable improvements—the half measures, the better outcomes. It will always be true that once a person has had that most frightening of conversations with chance, life will be split into two parts—the time before cancer, and the time after it. But for a fortunate few, perhaps the second part can be as good, and even as rich and wonderful and great, as the first.
PART II
“What Do We Want? Evidence-Based Science. When Do We Want It? After Peer Review”
Rethinking Established Science
SOPHIE BRICKMAN
The Squeeze: Silicon Valley Reinvents the Breast Pump
from California Sunday Magazine
On a recent Monday, four women gathered at a swanky coffee shop in San Francisco’s SOMA neighborhood and politely asked an unshaven engineer to move down so they could access an outlet. After plugging in, they slipped what looked like portable mini mist fans under their shirts.
If the engineer had been paying attention—instead of taking a break from his coding to scroll through a Wikipedia page on the head coach of the Houston Rockets—he might have been able to make out the wheezing sound of breast pumps at work, or noticed that four nearby bustlines had each grown an inch.
“I work, don’t have an office, have a seven-week-old at home, and don’t want to pump in the bathroom,” said Chloe Sladden, former VP of media at Twitter and a founding investor with #Angels, a women-led venture capital group. Amid ubiquitous laptop shoulder bags sat her tote, decorated with floating pairs of painted boobs.
The other women, who had gathered to test-drive the latest product from a startup called Moxxly, nodded vigorously. Instead of having to take off their shirts and affix two Xena: Warrior Princess–style cones onto their breasts, the Moxxly Flow, pump attachments set to hit the market this fall, allowed for discreet, under-the-bra, hands-free pumping. Two of the pumpers, including Sladden, are also investors.
Sladden adjusted her silk shirt, which draped loosely over her newly enhanced bosom. “It’s about time we focused on this part of motherhood,” she said.
The first mechanical breast pump, modeled after bovine milking machines, was invented in the 1920s, and little has changed about the fundamental design. A cone—or flange, as it’s called—is placed on each breast. A collection bottle is screwed into the bottom of each flange and dangles off the boob like a particularly unflattering nipple tassel. Long plastic tubes connect the flanges to a mechanical pump that suctions out the milk. What this means in practice: women have to find a private corner, remove their shirts, and watch their nipples get rhythmically suctioned for 20 minutes until they’re fully milked. If Mom would like to do something with her hands besides hold the cones in place, she needs to wear a sort of medieval corset, i.e., a tight-fitting pumping bra.
“It’s just undignifie
d and unjust,” says Cara Delzer, CEO and cofounder of Moxxly.
Delzer, who graduated from Stanford’s business school, was working in product marketing at eBay when she had her first child in 2013. “I’d be in a meeting, then 30 seconds later find myself with my shirt off,” she recalls. “I had a really supportive team, I had pumping rooms, the best setup anyone could have, but still it was untenable.” To men who might not understand the situation, she likens it to having to take your pants off for a half hour before hopping into a boardroom to deliver an important presentation.
But the logistics were just one issue. Another was packaging. The free pump her insurance company provided arrived in a cardboard box with a dry user manual. “It made me feel like I was a patient, not a woman,” Delzer remembers. She wandered the aisles in baby stores and found countless products marketed with the baby in mind. Why wasn’t there a brand out there that appealed to her?
In 2014, she partnered with two other Stanford graduates—designer Gabrielle Guthrie, who’d reimagined the breast pump for her master’s thesis, and Santhi Analytis, a mechanical engineer who worked with Guthrie on a breast pump redesign at a hackathon. They were accepted to Highway1, a hardware startup accelerator in San Francisco, where they began developing the prototype for what would become the Moxxly Flow: first, duct-taping existing parts together, then moving to 3-D printing. A timeline of the Flow’s evolution looks a bit like the March of Progress. With each iteration, the bottle gets more upright, the flange a little prouder.
Then one of the greatest challenges came to a head: raising capital. According to Transparency Market Research, the breast pump market is set to reach $2.6 billion worldwide by 2020, but as Delzer learned, “VC is a game of pattern recognition. And there’s no pattern here.” She’d often find herself in pitch meetings slipping parts under her bra and awkwardly explaining to a room full of VC partners—93 percent of whom are men—the indignities of the pumping life.
